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Tuesday, February 12, 2013

if you are my facebook friend then you know that i have been posting a picture a day since february began in honor of heart awareness month. as i posted today's picture i stopped to think....should i really use this one. you know the one with the fresh incision, iv's, lines and drains coming out all parts of my sons body. i almost didn't post it, but then i did. you know why? because it's the truth. it's our life. its my sons life. sure it may not be easy to look at. people may wonder why i would share pictures of my son in that condition. i say this....if he can endure it, you can look at it, learn about it and help raise awareness. if it were your baby you sure as hell would. it's really easy to look at them and say man that really sucks then continue on with life, but behind the pictures are endless hours, days, months and years of fighting to live. he fights so goddamn hard friends. isnt' that worth celebrating and sharing and honoring. if i didn't show you this...

4 days old post norwood

6 months old post glenn

2 1/2 years old post fontan

how could one ever really grasp the depth to which he has struggled. these pictures... they're just pictures. they don't show the screaming in pain, the delirium from the drugs, the begging for milkie when he's npo, the being held down, the screams of "no mommy no!" it takes my breath away time and again. he is amazing. all of these babies are amazing. they go through more pain than grown adults can handle and in the end they smile.
and that is, if they make it to the end. there are many, many, many who do not... they are called home far to early after living an entire life of struggle. it breaks my heart knowing this. it breaks my heart knowing that at any moment we could lose our boy. it breaks my heart knowing others are losing theres as i type this.

most people think that because he has had his three surgeries he is "fixed". he is not fixed. he still has a half of a heart. there is no adding half of a heart to his half. they call his surgeries "palliative". we all know what palliative means.....
every day i live with that. every cough, snort, runny nose, gag or puke sends me into a tailspin. that fear will never leave me. it will never go away as long as i live because my son, he's sick. he has a congenital heart defect. said to be one of the most complex and serious. this is my son's life.....

what i know is that without the norwood, glenn and fontan operations paxton would have died shortly after birth. what i also know is that without doctors and funding and raising awareness these surgeries would not be possible. it means that if we continue with these things imagine all that could come of the future.....

look at this article..... say what???? are you kidding me.... is it for paxton... doubtful, but but but what if future children can benefit from this. what if my kids kids can benefit from this. what if your kids kids can benefit from this. we all turn a blind eye on these tough, scary subjects until one day you turn around and its you. and i say that from experience. i remember always watching st. jude commercials sobbing tears and praying my child would never get cancer and here we are today with a CHD.

I could tell you thatcongenital heart defects are America’s and every country’s #1 birth defect. That nearly one of every 100 babies is born with a CHD or that congenital heart defects are the # 1 cause of birth defect related deaths or even that twice as many children die from congenital heart defects each year than ALL forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD's. And yet no illness be it cancer or heart or liver or skin, brain or kidney is more important than the other. they are all just as significant because the bottom line is these are our babies. our babies who have to suffer. innocent little lives with heartbroken bystander parents and families.

=And even though this is the only life he has ever known, he still gives us that smile.... good god we could all learn from these children. his eyes tell a lifetime of stories and his smile radiates that strength.

february is hearts and love month and what's more appropriate than that because our love for these kids is something fierce. there is no valentine card out there that can relay the depths to which we feel for these warrior children of ours. heros among heros, every last one of them...